CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.

Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.

Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.

Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.

People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.

We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.

As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.

As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.

For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.

Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.

Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.

We recognize the value of tapping into the expertise that only people with CF and their families have. We invite you to share insights to help improve and develop programs and services that support the daily lives of people with CF.

In addition to working for a cure, the CF Foundation supports programs and policies to improve the lives of people with CF. Help us by raising awareness of CF, participating in a fundraising event, or volunteering with your local chapter.

Terms of Agreement

By using or visiting the website, services, mobile applications, or content provided by www.cff.org (“Site”), a service of the Cystic Fibrosis Foundation (“CFF”), you are agreeing to be bound by the following Terms of Agreement (“Terms”). If you don't agree to these Terms, you may not register, visit, or use the Site.

1. NO PRACTICE OF MEDICINE

You understand and agree that we are not engaged in the practice of medicine, either through the Site or any associated communications or services, and that the Site is not a substitute for professional medical advice, diagnosis, or treatment. The Site is provided for informational purposes only and is provided "AS IS." You are encouraged to seek professional diagnosis and treatment for medical conditions. You should never disregard medical advice, delay visiting a medical professional, or deviate from a treatment plan prescribed or recommended to you by your medical professional because of something you have read on the Site. YOU AGREE THAT WE HAVE NO RESPONSIBILITY TO PROVIDE MEDICAL ADVICE OR TAKE ANY MEDICALLY RELATED ACTION IN RESPONSE TO ANY INFORMATION YOU PROVIDE ON THE SITE.

We do not recommend or endorse any specific studies, treatments, tests, procedures, physicians, opinions, products, or other information that may appear on the Site or on links reached through the Site. We have no control over any clinical trial or treatment described on the Site, and we cannot guarantee the accuracy of information about any clinical trial or treatment described on the Site. We are not liable for any consequences resulting from your participating or not participating in a clinical trial.

2. Future Changes to these Terms

These Terms can change at any time, and you should look at the Terms regularly. In general, your use of the Site after the effective date of any updated Terms posted on the Site constitutes your consent to the updated Terms. We expect that most changes will be minor in nature or reflect changes in the services we offer. However, in the unlikely event that we would ever make changes to these Terms that would materially disadvantage you, we would let you know in advance by email or by posting a notice on the site. The notice would designate a reasonable amount of time before the new terms would go into effect for all users, and if you continued to use the Site thereafter, your use would constitute consent to the new Terms.

3. Definitions

As used herein, “CFF” includes CFF and its affiliates, subsidiaries, officers, directors, employees, and agents.

4. Future Changes to Our Services or Site

We may change, terminate, or restrict access to any aspect of our services or Site, at any time, without notice.

5. Eligible Users of this Site

A. Age

This Site is intended for use by adults. If you are between the ages of 13 and 18 years old, you may use this Site only if: (i) your use has been approved by your parent or legal guardian, (ii) you use the Site under his or her supervision, and (iii) he or she has agreed to the Terms (and any additional registration agreements, if applicable) on your behalf.

If you are the parent of a minor, you may use the Site and agree to the Terms on behalf of the minor. By doing so, you warrant that you have the legal capacity to act on the minor's behalf and you agree that the provisions of the Terms (and any additional registration agreements, if applicable) that are applicable to you are equally applicable to the minor.

Under no circumstances may a minor under the age of 13 use the Site.

B. National Residence

The Site is intended primarily for U.S. users. If you are not a resident of the U.S.:

We make no claim that information on the Site is appropriate or permissible in your country. Products and clinical studies discussed on the Site may have different product labeling and disclosure requirements in different countries;

If you register or submit information on the Site, you agree that we may, subject to the protections and limitations described in our Privacy Statement and on the Site, collect, use, store, or disclose that information in the United States or in another country outside your jurisdiction that has not been ruled adequate by the European Union. You understand that information protection laws outside your country of residence may vary. By providing your information, you consent to the international transfer of your information for the purposes explained in these Terms, the Privacy Statement, or elsewhere on the Site.

6. Content Posted by Users

"Content" is content or information (including text, images, video, and audio) submitted or posted by users of the Site to the public areas of the Site. By submitting Content, you grant us, subject to our Privacy Statement, a worldwide, non-exclusive, royalty-free right to store, host, reproduce, create derivate works of, publish, publicly perform, display, use and distribute such Content. You also grant us the right to sub-license these rights and the right to sue for infringement of these rights. All these intellectual property rights are reserved. (To clarify, this license only applies to Content you publicly post to the Site -- it does not apply to any personally identifiable information you supply when you, for example, create an account, make a donation, or sign up for an event, which is used and protected in accordance with our Privacy Statement.)

7. Discussion Policy for Content Posted for Users

The purpose of our social pages on which users and visitors can post Content is to build a positive and productive community for people living with CF, their family, friends and supporters. We ask that you be respectful of others.

CFF may post its own blogs or other content on the Site, such as responses to inquiries or comments or news and updates about cystic fibrosis.

In general, CFF does not control, pre-approve, or monitor content submitted by our Community members. Nevertheless, CFF nonetheless retains the right (but not the obligation) to monitor, refuse to post, or delete any Content available through the Site.

Posts or discussions by Community members in no way reflect the views of CFF.

By posting any Content, you are agreeing that you will follow these Rules, as well as the rest of these Terms, and that we may use your Content to promote CFF's work and as described further herein.

We may remove or block Content and/or block users from CFF community pages if we consider Content to be in any way inconsistent with or harmful to the purpose of the community, including:

Use of names or photographs of individuals without their permission or Content that otherwise invades confidentiality or privacy interests;

Advice or other information that could cause injury, illness, or harm;

Promotion of any advertisement for products, services, or causes, or solicitation of funds or donations other than for CFF-related events or causes;

Content that infringes copyright or any other intellectual property rights.

Any other content that CFF believes, in our sole discretion, violates the spirit or letter of these Community Discussion Rules or any other provision in these Terms.

By posting Content, you further agree that:

CFF bears no responsibility for its accuracy, appropriateness, or quality;

You must evaluate and bear all risks associated with any Content you post, including the risks of any intellectual property or other legal claims related to the Content;

CFF will be in no way liable for any Content or any consequences of its inclusion or omission and that there is no implication that any Content posted by users on the Site is in any way endorsed or approved by CFF;

You have no recourse against CFF if we, in our sole discretion, post, refuse to post, delete, or refuse to delete, any Content submitted by users.

8. Registration, Passwords, and Security

If you register and create a CFF account, you must provide us with accurate information, and you will choose a password. You are responsible for maintaining the confidentiality of your password, and you are not permitted to share your password. You agree to notify us immediately of any unauthorized use of your account. CFF will not be liable for any loss you or others may incur as a result of someone else using your account, either with or without your knowledge.

9. Privacy and Protection of Personal Information

10. Third-party Accounts

We may use third parties to create, authorize, or service some of our user accounts or services. These third-party services may require you to agree to their terms of use, privacy policy, and other agreements between you and them.

11. Links to Other Websites

Our Site contains links to other websites not operated by CFF. We have no control over these other websites and any links to them do not constitute our endorsement of them or their content. You understand and agree that these other websites are governed by their own user agreements and privacy policies and that any visits to them are at your own risk.

12. CFF's Copyright and Trademarks

All information and content, including any software available through the Site, is protected by copyright and/or trademark and is owned as Intellectual Property of the owner. All rights are reserved. Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing, creating derivative works, or using any content available on or through the Site for commercial or public purposes.

The trademarks, logos, and service marks ("Marks") displayed on the Site, including the CFF logo, 65 Roses® and Great Strides®, among others, are registered trademarks of the Cystic Fibrosis Foundation, are the property of CFF, and are protected by U.S. and international trademark laws. Their uses are restricted to those programs and events sponsored by CFF, and CFF trademarks may not be used for personal financial gain.

Use of the Marks is prohibited without the express written consent of CFF except as permitted by applicable laws. Nothing contained on the Site should be construed as granting, by implication, estoppel, or otherwise, any license or right to use the Marks without the express written consent of CFF.

At times, CFF may grant limited-use licensing agreements to individuals or groups who wish to help further the mission of CFF. Solely at the discretion of CFF, limited permission for use of CFF's Marks may be granted for particular projects that provide a substantial benefit to the CFF or the cystic fibrosis community in general.

For consideration, please submit a written letter of intent that details how CFF's Marks would be used, the length of time they would be used, and the benefit of the project to CFF or the cystic fibrosis community at least 60 days prior to your intended use. Letters of intent may be sent to:

13. Copyright Complaints about the Site

CFF respects the copyrights of others and does not knowingly infringe upon these rights. However, if you believe that your work has been copied and is accessible on the Site in a manner that constitutes copyright infringement, please notify CFF's Intellectual Property agent by written notice. The requirements for what you must include in your notice are in the Digital Millennium Copyright Act, 17 U.S.C. § 512. We respond expeditiously to notices of claimed copyright infringement.

14. Communications between You and CFF

For contractual purposes, you (a) consent to receive all communications from CFF in electronic form via the email address you submit when you register, and (b) agree that all Terms, agreements, notices, disclosures, and other communications that we provide to you electronically satisfy any legal requirement that such communications would satisfy if they were in printed writing.

15. Prohibited Uses

As a condition of using the Site, you agree that you will not use the Site in any way that is prohibited by law or these Terms. These prohibitions include, but are not limited to, the following:

You must not use our Site in any way that may damage, overburden, or impair the Site or its availability, including any denial-of-service or similar attacks.

You may not use the Site in any way that is illegal, fraudulent or harmful or related to any illegal, fraudulent or harmful activity.

You may not attempt to gain unauthorized access to the Site, other accounts, or computers or networks associated with the Site, its users, or CFF, including but not limited to using another person's login credentials.

You must not use our Site to copy, store, host, transmit, send, use, publish or distribute any material that consists of (or is linked to) any malicious computer software.

You may not copy, modify, distribute, sell or lease any part of the Site or its content or its software, nor may you reverse engineer or attempt to extract the source code of that software.

You must not conduct any systematic or automated data collection activities (including, without limitation, scraping, data mining, data extraction and data harvesting) on or in relation to our Site.

You must not use our Site to send spam, surveys, or any unsolicited commercial communications.

You must not use our Site for any purposes related to marketing, research, or any other commercial or organizational purpose without our prior express written consent.

You are required to respect the confidentiality and trust of others participating in any Community Discussion portions of the Site or otherwise posting Content on the Site.

16. NO WARRANTIES

CFF DOES NOT MAKE ANY EXPRESS OR IMPLIED WARRANTIES, REPRESENTATIONS OR ENDORSEMENTS WHATSOEVER (INCLUDING, BUT NOT LIMITED TO, WARRANTIES OF TITLE OR NON-INFRINGEMENT, OR THE IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE) WITH REGARD TO THE SITE, ANY OF THE SITE'S CONTENT, OR ANY MERCHANDISE PROVIDED THROUGH THE SITE OR ON THE INTERNET GENERALLY, AND CFF SHALL NOT BE LIABLE FOR ANY COST OR DAMAGE ARISING EITHER DIRECTLY OR INDIRECTLY FROM ANY SUCH TRANSACTION. IT IS SOLELY YOUR RESPONSIBILITY TO EVALUATE THE RELIABILITY, ACCURACY, TIMELINESS, COMPLETENESS OR USEFULNESS OF ALL SERVICES AND CONTENT PROVIDED THROUGH THE SITE OR ON THE INTERNET GENERALLY. CFF DOES NOT WARRANT THAT THE SITE WILL BE UNINTERRUPTED OR ERROR-FREE OR THAT DEFECTS IN THE SITE WILL BE CORRECTED. THE SITE AND THE CONTENT MADE AVAILABLE ON THE SITE ARE PROVIDED ON AN "AS IS" AND "AS AVAILABLE" BASIS. TO THE MAXIMUM EXTENT PERMITTED BY LAW, CFF DISCLAIMS ALL WARRANTIES.

YOU ASSUME TOTAL RESPONSIBILITY AND RISK FOR YOUR USE OF THE SITE AND THE INTERNET. YOU ACKNOWLEDGE AND AGREE THAT ANY UPLOADS OR TRANSMISSIONS YOU MAKE MAY BE INTERCEPTED AND USED BY AN UNAUTHORIZED THIRD PARTY AND THAT ALL OF THE RISK ASSOCIATED THEREWITH IS SOLELY YOURS.

CFF shall also have no liability whatsoever for any unavailability of the Site or for any loss of data or transactions caused by planned or unplanned system outages or the resultant delay, misdelivery or nondelivery of information caused by such system outages, or any third party acts or any other outages of web host providers or the Internet infrastructure and network external to the Site.

17. LIMITATION OF LIABILITY

UNDER NO CIRCUMSTANCES SHALL CFF OR ANY OTHER PARTY INVOLVED IN CREATING, PRODUCING, OR DISTRIBUTING THE SITE BE LIABLE FOR ANY DIRECT, INDIRECT, INCIDENTAL, SPECIAL, PUNITIVE OR CONSEQUENTIAL DAMAGES FOR LOSS OF PROFITS, GOOD WILL, USE, DATA OR OTHER INTANGIBLE LOSSES (EVEN IF CFF HAS BEEN ADVISED OF THE POSSIBLITY OF SUCH DAMAGES) THAT RESULT FROM (i) THE USE OF OR INABILITY TO USE THE SITE; (ii) THE COST OF PROCUREMENT OF SUBSTITUTE MERCHANDISE AND SERVICES RESULTING FROM ANY MERCHANDISE, DATA, CONTENT OR SERVICES PURCHASED OR OBTAINED OR TRANSACTIONS ENTERED INTO THROUGH OR FROM THE SITE; (iii) UNAUTHORIZED ACCESS TO, ALTERATION OF, OR USE OR DISCLOSURE OF YOUR TRANSMISSIONS OR DATA; (iv) STATEMENTS OR CONDUCT OF ANY THIRD PARTY ON THE SITE; OR (v) ANY OTHER MATTER RELATING TO THE SITE. YOU HEREBY ACKNOWLEDGE THAT THIS PARAGRAPH SHALL APPLY TO ALL CONTENT, MERCHANDISE, AND SERVICES AVAILABLE THROUGH THE SITE. SOME STATES MAY NOT ALLOW THE EXCLUSION OR LIMITATION OF LIABILITY FOR CONSEQUENTIAL OR INCIDENTAL DAMAGES; IN SUCH STATES LIABILITY IS LIMITED TO THE FULLEST EXTENT PERMITTED BY LAW. YOUR SOLE REMEDY FOR ANY DISSATISFACTION WITH THE SITE OR ITS CONTENTS IS TO STOP USING THE SITE OR ANY SUCH CONTENT. THIS LIMITATION OF LIABILITY IS A PART OF THE BARGAIN BETWEEN THE PARTIES.

IF, NOTWITHSTANDING THESE LIMITATIONS, CFF IS FOUND LIABLE TO YOU FOR ANY DAMAGE OR LOSS THAT IS IN ANY WAY ASSOCIATED WITH THE SITE OR ITS CONTENT, CFF'S LIABILITY WILL IN NO EVENT EXCEED $50 (FIFTY DOLLARS). THIS LIMITATION SHALL APPLY TO THE MAXIMUM EXTENT PERMITTED BY LAW.

18. INDEMNIFICATION FOR CONSEQUENCES OF USER VIOLATIONS

YOU AGREE TO INDEMNIFY, DEFEND AND HOLD CFF HARMLESS FROM AND AGAINST ANY AND ALL CLAIMS, DEMANDS, ACTIONS, COSTS, LIABILITIES, LOSSES AND DAMAGES OF ANY KIND (INCLUDING ATTORNEY'S FEES) RESULTING FROM (I) YOUR USE, MISUSE OR ABUSE OF THE SITE, OR (II) YOUR BREACH OF THESE TERMS. You will cooperate as fully as reasonably required in CFF's defense of any claim. CFF reserves the right, at its own expense, to assume the exclusive defense and control of any matter otherwise subject to indemnification by you, and you shall not in any event settle any matter without the written consent of CFF.

19. Disputes, Arbitration, and Governing Law

If you have a complaint, question, or dispute (collectively, "dispute") regarding the Site, you are encouraged to bring it to our attention. You may email us at info@cff.org, and we will try to address your concerns. If we are unable to resolve a dispute ourselves, any dispute relating in any way to the Site shall be submitted to confidential arbitration in Montgomery County, Maryland, except that to the extent you have in any manner violated or threatened to violate our intellectual property rights, we may seek injunctive or other appropriate relief in any federal or state court. Arbitration under these Terms shall be conducted in accordance with the prevailing rules and procedures of the American Arbitration Association, with each party being responsible for its own costs and fees, and the joint costs of arbitration being shared equally by the parties. The arbitrator's award shall be final and binding and may be entered as a judgment in any court of competent jurisdiction.

To the fullest extent permitted by applicable law, no arbitration or claim under these Terms may be joined to any other arbitration or claim, including any arbitration or other legal proceeding involving any other current or former user of the Site, and NO CLASS ACTION PROCEEDINGS WILL BE PERMITTED.

By agreeing to arbitration in these Terms, you understand and agree that you are relinquishing (i) any right to pursue claims or have disputes resolved in a court of law, (ii) any right to compulsory discovery, and (iii) any right to the appeal of any adverse arbitration decision.

You agree that, regardless of any law or statute, any claim or cause of action you may have against us must be brought within one year after the claim or cause of action arises or is known or should reasonably have been known to you, or the claim or cause of action will be forever barred.

Except for matters of United States federal law governing copyrights, trademarks, and patents, all matters related to the Site will be governed by the laws of Maryland, without regard to conflicts of laws provisions, and, if applicable, you consent to personal jurisdiction in Maryland courts and venue in Montgomery County, Maryland courts.

20. Violation of these Terms

You agree that CFF may, at our sole discretion and without prior notice, terminate your access to the Site if you violate these Terms or for any other reason. You also agree that CFF may disclose any information we have about you, including your identity, if we determine that such disclosure is needed in connection with any investigation or complaint about your use of the Site or to identify, contact, or bring legal action against you or someone who may be injuring or interfering with CFF's rights or property or the rights of users of the Site.

21. Other Legal Terms

Any failure or delay by either party to enforce any part of these Terms will not constitute a waiver of that party's rights under these Terms. These Terms control the relationship between you and CFF, except that if we enter into additional or separate agreements, those terms will supplement these Terms and will control to the extent they are contrary to these Terms. These Terms do not create any third party beneficiary rights. If a particular provision of these Terms is determined by a court of competent jurisdiction to be unenforceable, the other provisions will remain in effect. You may not transfer your account or your rights under these Terms to any other person or entity. Headings used throughout these Terms are solely for convenience. We may, in our sole discretion, transfer, delegate, or assign our rights and obligations under these Terms to others without notifying you or obtaining your consent. Except as otherwise provided herein, the current version of these Terms, which incorporate our Privacy Statement by reference, constitutes the entire agreement between you and us in relation to the Site.

22. Cookies

The Site uses cookies to store information on your computer. By using the Site, you consent to the placement of these cookies. Please read our Privacy Statement to learn more.

23. Feedback

If you have any concerns, inquiries, or complaints about the Site or these Terms, please write to us at info@cff.org. We appreciate your input.